column logo Alithea Athans

When I was 16, I was in a car accident, broke my nose, and injured my collarbone and neck. All these years later, I now experience reoccurring pain. I have been in physical therapy twice in the past few years and it is looking like I may be headed back.

I offer this background because cold agglutinin disease (CAD) causes chronic joint pain in those afflicted. I wonder if my CAD is responsible for the pain I experience. Perhaps even an old injury would be more so affected.

It is quite possible that what I experience is a residual effect of getting hurt as a teen. As we get older, we start to feel every bit of what we did to our bodies as we age. With 360 joints in our bodies, this leaves far too many options for CAD to cause pain. Until recently, I was not aware that this joint discomfort could be a side effect of CAD.

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This past winter, aside from the usual neck and shoulder pain I discussed, I started to experience stiffening in the ball of my lower back and sometimes in the knees and elbows. I attributed this to the lack of movement now that I had been primarily working from home. 

Now that I am back in the world and trying to continue what would be my normal routine, I am moving more, I am more flexible, and the warm weather helps. However, this past week I experienced severe joint pain, which I find odd considering at this point my primary CAD falls in the mild range. 

The cold is what affects us most, so the winter and the cooler end of fall would have the most effect on our bodies. The understanding is that joint fluid thickens due to the cold, which creates discomfort. In CAD, our blood clumps together when exposed to the cold. The combination of the two creates increased pain and discomfort

So how could it be that last week, when it was in the high 70s for the first time, I experienced extreme joint pain? It extended from the ball on my lower back, at my hip, and knee all on the left side. I needed to go out to the store, and I had to use the shopping cart to walk steadily. It eventually let up on its own.

Since it is a side effect of CAD, it’s not going to go away permanently. This brings me to how to treat this kind of pain.

Read about experimental therapies for CAD

Unfortunately, the first recommendation typically is to use ice to take away the inflammation and then heat. Of course, I cannot use ice, so I need to skip the ice step and go straight to the heat. Next, it is suggested that I take NSAIDs, which I have had a problem with in the past. I am not sure why but I usually develop petechiae after use. 

I need a viable option that will not exasperate CAD nor cause any other issues. What I have learned in dealing with chronic neck/shoulder pain is that topical lidocaine works best. I cannot use the over-the-counter medications that are ice then hot for obvious reasons. I found a topical lidocaine cream, Blu Emu, that works for an extended period.

I normally would not recommend any products but since my choices are limited outside of requesting a prescription for a painkiller, this is an excellent choice. It works well enough that I do not need to take any NSAIDs or acetaminophen. Even though acetaminophen is not an anti-inflammatory, it is the only option that I have been able to use for pain. 

As someone who is dealing with CAD, it is important to share as much as I can from what I have learned through trial and error. Unfortunately, this rare disease is still without a wealth of knowledge for practitioners and patients. It is, for this reason, I am so thankful to share my experiences in hopes that it helps both practitioners and patients alike.